Charlie Gard and the Tenacity of Hope

There is a hardly a more compelling example of the ravages of disease warring against the hope for life than that of Charlie Gard. Charlie is almost a year old now, born last August in the U.K. Shortly after his birth, it was discovered that he had a rare genetic condition known as mitochondrial DNA depletion syndrome, which affects vital internal organs such as, as in Charlie’s case, the kidneys and brain. At present, Charlie is being kept alive by a ventilator, but the hospital at which Charlie is staying asked a judge back in March to rule that life support should be discontinued, which the judge ruled in support of in April. Charlie’s parents appealed the ruling, but did not get it overturned. Both President Trump and Pope Francis have signaled their support for Charlie, with the pope even offering Charlie a spot at the Vatican pediatric hospital for continuing treatment. Charlie’s parents have asked to have their son transferred to the U.S. for an experimental treatment, which has had some limited success, but the U.K. hospital has refused to do so, citing legal hurdles.

The issues in this dispute are legion. Should a judge have the ability to trump parents’ wishes with regard to their own child, provided that the parents are seeking the genuine welfare and, in this case, the continued life, of their son? Are Charlie’s parents seeking the correct course of action, considering their son is not able to live, at least at this point, apart from extraordinary and continuous medical intervention? And what are the hopes for some sort of improvement or change in Charlie’s condition if he is moved elsewhere to receive treatment?

It is the last of these questions that is most captivating to me because it is the question that sits in the background of the first two questions. The U.K. believes there is no real hope for Charlie’s recovery. Charlie’s parents believe there is enough hope for, at minimum, some sort of improvement that they want to continue his life support and investigate an experimental treatment. This battle royal, then, boils down to hope.

Over the course of my ministry, I have known more than one person who was terminally ill and, when presented with an option for an experimental treatment, declined and instead chose to go into hospice because they did not see any real hope for healing, even with the treatment. This does not mean, however, that these people did not have any hope. Their hope was simply located in a different place – not in a treatment, but in a Lord who can call even the dead to life. Whether it is a temporary stay on death by means of a medical treatment, or an eternal resurrection on the Last Day by means of a trumpet call and a returning Christ, hope for life, it seems, will not be squelched.

Theologically, the irrepressibility of hope for life makes sense because, in the beginning, death was not part of God’s plan. Contrary to Yoda, death is not a natural part of life – and we know it, even if only intuitively. Death, Scripture says, is an enemy to be defeated. And though Charlie’s parents cannot conquer death like Christ, they do seem voraciously intent on confronting death through the very best that medicine has to offer their son.

It does unsettle me that a judge would arrogate to himself the prerogative of telling two parents whether or not their son can receive a potentially life-saving treatment. I will confess that, according to the information at hand, the hospital is probably correct in its estimation of Charlie’s recovery prospects. But hope has a funny way of looking beyond the information at hand to divine intervention. And that is a hope that is worth holding on to. Indeed, as Christians, we know that is the hope Jesus died to give and rose to secure. I hope the hospital and the British legal system can respect that hope.

When my mom was terminally ill with a blood cancer she chose to have experimental drugs infused into her body because she thought that it may help someone else down the line, She suffered immensely trying to help other, She knew Jesus & shared it with kids in Sunday School for 40 years. She is my hero!